Having cystic fibrosis has been an uphill battle especially when it comes to being active and trying to maintain a healthy lifestyle.
I started dancing when I was 5 years old. My parents put me in dance class because they thought it would help me get a decent amount of exercise, and I didn't seem to be as interested in anything else growing up. Once I started, I fell in love with it and started to do competitive dance when I turned 6. From there, I would travel all over to dance competitions, take master classes, and train long hours at multiple dance studios.
Dancing, for me, came naturally. I really enjoyed all styles of dance from ballet and contemporary to jazz and hip hop. I truly fell in love with it all. I would constantly talk about how much I loved going to the dance studio. I remember dance was something that I was completely obsessed with while I was growing up. My conversations were always geared toward when I would be going back the next day.
As I got older, I started to realize that dance is something that I truly enjoy and will stick with forever. I would constantly immerse myself in anything and everything dance-related. I not only trained weekly at my dance studio, but I also watched TV shows that related to dancing, including “So You Think You Can Dance.” It was my absolute favorite show growing up, and I would watch it religiously every Monday night.
I remember making a promise to myself that -- one day -- I would go on that show and dance when I was old enough.
Fast forward to the beginning of 2019 when the opportunity of a lifetime fell right in my lap. I was at the age and place in my life where I felt like I could give it a shot and audition for “So You Think You Can Dance.” I submitted my audition video and -- shortly after -- was called for the first round of auditions, which was the non-televised portion in New York City. After making it through, I went forward to the televised producer-round, which was in Los Angeles. I couldn't believe it. I was shaking with excitement and nerves all at once.
I flew to LA and got to experience my dream reality show. I was interviewed by the show's host, Cat Deeley. I was guided through tons of B-roll and video footage, and I had multiple interviews with producers talking about my CF story, as well as my parents' perspective. Throughout the experience, I met so many new friends while also getting to do the main event -- performing a solo in front of the judges. That moment was surreal for me. I danced (feeling very winded afterwards) and the responses from the crowd and judges made it all worthwhile. I got a standing ovation and some very encouraging words from the judges that gave me my ticket to the Academy (which was the next round of auditions).
Right after leaving LA on a high, I had to fly home to a room full of medical tubes and machines. The hospital trip left me sitting in a bed for two weeks instead of training for the next round of auditions. I felt extremely hopeless and weak just waiting for the chance to train before I had to fly back to LA.
But, CF is unpredictable. I had to just deal with the cards I had been dealt with. After two weeks of being in a hospital bed, I had only one day to prepare before flying back to LA. I was so nervous but decided to just roll with the punches and felt that whatever happened it was meant to be. Once I arrived, I went through the round of auditions.
After I got eliminated, I was devastated. I knew, however, that this wasn't the end of the road in my dance journey; it was merely the closing of this chapter I had grown to love.
Even though my journey on the show came to an end, there was so much in store for me that year that I didn't expect. After making my “So You Think You Can Dance” debut, I had so much heartwarming and positive feedback from so many people in the CF community and beyond. People from all over and of all ages were telling me how moved they were and touched by my performance -- those kinds of messages truly made me the happiest. I then realized why I do what I do. To have had the opportunity to share my love for this art form with so many -- as well as my life story -- is something that is so fulfilling.
After going through that experience, I was filled with gratitude. I didn't really know what could ever top that, but then something came into my life that completely changed it forever. In October 2019, Trikafta®, a breakthrough medicine, was approved for people who have at least one copy of the F508del mutation. It was a day to celebrate science, medicine, and all the donors who have contributed to years of research development. I remember getting the call one month later that my insurance approved it, and I cried tears of relief and joy.
It has been more than one year since I started Trikafta, and I can truly say I have never felt so healthy in my entire life. The big shift was in my dancing. I started to notice little things like not coughing at all while exercising, laughing, or simply just doing errands. I found myself not having as many asthmatic attacks and episodes.
When I dance, it's like my lungs are sighing with relief. I am able to maintain a stable breathing pattern -- and no longer have to gasp for air when trying to move -- and enjoy my time at the dance studio.
To say Trikafta has saved my life is an understatement. Trikafta has not only improved my dancing but has created a newfound world for me to live. At the end of the day, life is short and sometimes we just don't know what the future holds. I am thankful to have had the best CF care team over the years to help guide me on as healthy of a journey as possible. My phrase that I say all the time is, “Breathe easy in hopes that one day breathing easy won't just be a hope but a reality for all individuals living with cystic fibrosis.”
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